For eleven years I pleaded with my obstinate
elderly father to allow a caregiver to help him with my ailing mother, but
after 55 years of loving each other he adamantly insisted on taking care of
her himself. Every caregiver I hired to help him called in exasperation,
"Jacqueline, I just can't work with your father–his temper is impossible to
handle. I don't think he’ll accept help until he's on his knees himself."
My father had always been 90% great, but boy-oh-boy that temper was a doozy.
He’d never turned on me before, but I'd never gone against his wishes
either. When my mother nearly died from his inability to continue to care
for her, I flew from southern California to San Francisco determined to save
her life–having no idea that it would nearly cost me my own.
EARLY SIGNS OF DEMENTIA?
I spent three months in the hospital nursing my 82-pound mother back to
relative health, while my father went from normal one minute to calling me
nasty names and throwing me out of the house the next. I walked on egg
shells trying not to upset him, even running the washing machine could cause
a tizzy, and there was no way to reason with him. It was heart wrenching to
have my once-adoring father turn against me.
I immediately took my father to his doctor, only to be flabbergasted that he
could act normal when he needed to. I could not believe it when the doctor
looked at me as if I was lying. She didn’t even take me seriously when I
reported my father had nearly electrocuted my mother, but fortunately I
walked into the bathroom three seconds before he plugged in a huge power
strip that was soaking in a tub of water–along with my mother’s feet! Much
later, I was furious to find out my father had instructed his doctor (and
everyone) not to listen to anything I said because I was just a (bleep)
liar—and all I wanted was his money! (I wish he had some.)
Then things got serious. My father had never laid a hand on me my whole
life, but one day nearly choked me to death for adding HBO to his
television, even though he had eagerly consented to it a few days before.
Terrified, I call the police for the first time in my life who took him to a
psychiatric hospital for evaluation. I could not believe it when they
released him right away, saying they couldn't find anything wrong with him.
What is even more astonishing is that similar horrifying incidents occurred
three more times.
CAREGIVER CATCH 22
After three months, I was finally able to bring my frail mother home from
the hospital, but furious to find myself trapped. I couldn't fly home and
leave her alone with my father–she'd surely die from his inability to care
for her. I couldn't get my father to accept a caregiver, and even when I
did—no one would put up with his temper very long. I couldn't get healthcare
professionals to help–my father was always so darling in front of them. I
couldn't get medication to calm him, and even when I finally did—he refused
to take it and flushed it down the toilet. I couldn't place my mother in a
nursing home—he'd take her out. I couldn't put him in a home—he didn't
qualify. They both refused Assisted Living—legally I couldn't force them. I
became a prisoner in my parents' home for nearly a year trying to solve
crisis after crisis, begging for professional help—and infuriated with a
medical system that wasn't helping me appropriately.
GERIATRIC DEMENTIA SPECIALIST MAKES DIAGNOSIS
You don't need a doctorate degree to know something is wrong, but you do
need the right doctor who can diagnose and treat dementia properly. Finally,
a friend suggested I call the Alzheimer’s Association who directed me to the
best neurologist in the area who specialized in dementia. He performed a
battery of blood, neurological, memory tests, CT and P.E.T. scans. After
reviewing my parents’ many medications and ruling out numerous reversible
dementias such as a B-12 and thyroid deficiency, you should have seen my
face drop when he diagnosed Stage One Alzheimer's in both parents—something
all their other healthcare professionals missed entirely.
TRAPPED IN OLD HABITS
What I'd been coping with was the beginning of Alzheimer’s (just one type of
dementia), which begins very intermittently and comes and goes. I didn't
understand that my father was addicted and trapped in his own bad behavior
of a lifetime and his habit of yelling to get his way was coming out over
things that were irrational... at times. I also didn't understand that
demented does not mean dumb (a concept not widely appreciated) and that he
was still socially adjusted never to show his ‘Hyde’ side to anyone outside
the family. Even with the onset of dementia, it was astonishing he could be
so manipulative. On the other hand, my mother was as sweet and lovely as
she’d always been.
KEY: BALANCE BRAIN CHEMISTRY!
Alzheimer's makes up 60-80% of all dementias and there's no stopping the
progression nor is there yet a cure. However, if identified early there are
four FDA approved medications (Aricept, Exelon, Razadyne and Namenda) that
mask symptoms, keeping the patient in the early independent stage longer,
delaying the need for part to full-time care. The Alzheimer’s Association
reports that with optimal lifestyle changes (proper nutrition, weight,
exercise, socialization), a five year delay in the onset could save $50
BILLION in annual healthcare costs. Even a one month delay in nursing home
placement of Alzheimer’s patients could save the U.S. $1 BILLION annually.
After the neurologist masked the symptoms of Alzheimer’s Disease in my
parents, he treated their depression which is often present in AD patients.
It wasn’t easy to get the dosages right and it took time and patience -- and
no, my father wasn’t suddenly turned into an angel, but at least we didn’t
need police intervention any longer!
CREATIVE BEHAVIORAL TECHNIQUES
Once my parents’ brain chemistries were better balanced, I was able to
optimize nutrition, fluids, medication, treatments, exercise and
socialization with much less resistance. I was also able to implement
creative techniques to cope with the intermittent bizarre behaviors. Instead
of logic and reason—I used distraction and redirection to things they were
interested in. I learned to use reminiscence and talk about the old days,
capitalizing on their long-term memories which were still quite good.
Instead of arguing the facts—I agreed, validated frustrated feelings, and
lived in their realities of the moment. I finally learned to just ‘go with
the flow’ and let hurtful comments roll off.
And if none of that worked, a bribe of ice cream worked the best to cajole
my father into the shower, even as he swore a blue streak at me that he’d
just taken one yesterday (over a week ago). I was also finally able to get
my father to accept a live-in caregiver (he’d only alienated 40 that
year—most only there for about ten minutes), and then with the benefit of
Adult Day Care five days a week for my parents and a support group for me,
everything finally started to fall into place.
IF ONLY WE HAD LONG TERM CARE INSURANCE!
Before long my parents’ life savings was gone and we were well into mine. I
was advised to apply for Medicaid and after months of evaluation they were
approved for financial help from the government. I was so relieved, until I
learned it would only pay to put my parents in a nursing home, not keep them
at home with 24/7 care. And, since my mother needed more skilled care than
my father, they’d be separated, something they would never consent to—nor
did I want after all this work to keep them together.
I could not believe it—I finally had everything figured out medically,
behaviorally, socially, legally, emotionally, caregivers in place, the house
elder-proofed, and all I needed was financial help to keep them at home. If
I’d only made sure my parents bought Long Term Care Insurance (or bought it
for them) years ago while they were healthy before diagnosis of dementia, it
would have covered the cost of their care at home. Instead, I paid for their
care, which nearly wiped me out in every way. After five years of managing
24/7 care for my parents, I survived invasive Brst. Cancer.
DEMENTIA OFTEN OVERLOOKED
What is so unsettling is that not one healthcare professional discussed the
possibility of the beginning of Alzheimer’s (or any type of dementia) in my
parents with me that first year, which happens far too often. Alzheimer's
afflicts 5.4 million Americans, but millions go undiagnosed for years
because intermittent subtle warning signs are chalked up to stress and a
‘normal’ part of aging. Since one out of eight by age 65, and nearly half by
age 85 get AD, healthcare professionals of every specialty should know the
‘Ten Warning Signs of Alzheimer's’ and educate their patients early so
everyone can save time, money—and a fortune in Kleenex!
TEN WARNING SIGNS OF ALZHEIMER'S
(Reprinted with permission of the Alzheimer’s Association)
1. Memory loss
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation of time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative
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